Writing about the threads of happiness that are inextricably woven through the cloth of my life keeps me Walking on the Happy Side of Life. Walk with me as I share my life as Mom to 3 wonderful children -- including identical twins blessed with an extra 21st chromosome each -- a condition known as Down syndrome.

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Saturday, October 2, 2010

I'd venture to guess that regardless of where you live, or what country you call home, the reaction of individual parents who receive the news that their newborn baby has Down syndrome -- whether that information comes at birth or during pregnancy -- are more similar overall than not. It's likely this similarity is the reason so many parents of newborns with Down syndrome are provided, at some point usually early in their new journey, with the "Welcome To Holland" story that was given to me to help me "get over the disappointment" of having a child with Down syndrome instead of the typical child I was expecting.

Personally, I was never disappointed! Honestly!

It amuses me that so many adults enter into this parenthood-thing with hard-core expectations of what it's going to be like to be a parent... complete with a specific vision of who or what their child will be. I'd also venture to guess that if you asked MOST parents -- of children with or without Down syndrome or any other special need -- they'd tell you that their pre-parental perceptions were somewhat misguided about how their children would behave and about how much hard work and sacrifice this parenting thing requires.

Yet, we parents of children with Down syndrome are told that it's OK to mourn the loss of that "typical" child we thought we were getting until we gain some acceptance of the child we ended up with. Like we got the booby prize but we'll eventually learn to love "it" anyway. As though Holland could never be as nice a vacation destination as Rome even if you picked Holland in the first place. I recognize that this thought process helps so many parents come to terms with the diagnosis. But doesn't it sound a bit odd when you read that sentence above? The child -- or children -- I got are not booby prizes! And I am not mourning the death of the typical child that died in-womb and was mysteriously replaced by this one (or two) I got. My children are exactly who they are supposed to be. In reality, the funeral should be for our unrealistic EXPECTATIONS that rightfully died. It's not that Holland isn't a beautiful place to vacation, it's that we mistakenly thought we were going to Rome. The problem is NOT the destination we ended up in, it's the full blown and unrealistic EXPECTATION of adults who thought they knew exactly where they were going and that it was somewhere else than where they ended up. By the way, this sentiment describes many a parent of typical children that I know too!

I do not disagree that THIS life I'm living is not quite what I'd expected my life to be way back when I was 20-something years old and dreaming of what my prince might look like. I can tell you that my fairy tale visions of life had all but vanished from my memory; replaced by a completely acceptable reality as a function of all the wonderfuldates (note the sarcasm font) I had that contributed to the demise of those unrealistic dreams and set me up for life-long unconditional acceptance of whatever came my way... long before I ever seriously contemplated actually having children of my own. As a dreamy eyed young lady, I knew without a doubt that I wanted to have children some day. And as a not-so-young adult finally contemplating marriage -- the ring already on my finger -- I gave very SERIOUS thought to WHY I wanted to have children of my own. Not that my resolve to have them had changed at all... but I felt compelled to examine my reasons WHY I would have them.

In a nutshell, I wanted desperately to share my love and knowledge of this wondrous world that God gave us with a child.... this despite acknowledging some nasty developments in the world (like 9/11 though that did not occur until I was 8 months pregnant with my first child). I wanted to be a part of forming the peaceful and remarkable future of our society by teaching my children, and for them to teach their children, to be universal citizens of the world. I wanted to share my laughter, my faith, and my love with my children and to have them share theirs with me... I wanted to see the world again, and forever, through the innocent eyes of a child.

Yes, I always knew I'd absolutely have children! But my expectations had morphed into who I hoped I would be as a parent more than who I thought my child would be right out of the proverbial gate.

That said, early on in my pregnancy, any thought of typical went right out the window as I sat on the OB/GYN's table, 8 weeks pregnant and wondering whether I was carrying a boy or a girl. I love a surprise and so I KNEW this was a question that would not be answered -- along with what color eyes, hair and skin tone my child would have -- for at least another 7 months. Honestly, my own expectations of typical went right out the window when the midwife said, "and there's the other baby!" Yes, I mourned my idea of having just 2 children total instead of the 3 I'd have after birthing these twins. The next few months dragged painfully by, dashing whatever meager expectations I might have had for a "normal" pregnancy with each pre-natal test and death-defying medical diagnosis I was given. Down syndrome was NEVER mentioned but absolutely false positive diagnoses of hydrocephaly, microcephaly, viral infections calcifying their brains, still births, vegetative states at birth, painful deaths following birth and more -- I could go on but you get the picture. I was put through test after test and rushed from one specialist to another all subtly suggesting that I terminate because these babies would not be perfect... Might not survive anyway. And then, I suffered the disappointment of having my own body begin to give out under the physical and emotional stress of carrying two potentially imperfect babies. I finally asked them all to stop! I told them no more tests and to just be prepared for whatever might happen at their birth. I said calmly and quietly -- but felt as though I'd screamed it at them -- that this would be a matter of God's will and all that good stuff...

And then, 32 1/2 weeks into what should have been a 40-week pregnancy, I gave birth -- Baby A's idea to come early -- to two healthy, breathing-on-their-own baby boys! 4 lbs 15 ounces and 4 lbs 11 ounces at 8 weeks early! (For those of you who might not know, 5 lbs each is the typical weight for full-term twins.) My babies were NOT still born. There was NO hydro or microcephaly. They were NOT "vegetables". There were no viruses in their brains! Everything, every piece and part that was supposed to be there was working well and accounted for. 10 fingers. Oh, sorry... 20 fingers and 20 toes. 2 healthy hearts. All the prerequisite and fully functioning organs. Two pairs of beautiful blue eyes framed by brown hair. Nearly 18" tall each! Big and Tall despite missing their last 2 growth months of pregnancy and, especially, for being 8 weeks early! IDENTICAL twins even though they were in two separate sacs (we mistakenly came to believe they would be fraternal twins but learned that 2% of all identical twins split in the fallopian tube and develop in separate sacs like ours did). And, just between you and me, I had nearly convinced myself I was having a boy and a girl! But here they were. 2 months early and healthy! ABSOLUTELY COMPLETELY HEALTHY! My two beautiful baby boys!

Talk about EXPECTATIONS? NO, I was NEVER disappointed. Not for a single moment. I was ELATED! They were ALIVE! They were WELL! They were breathing on their own. I had two HEALTHY babies!

Within 5 minutes of arriving at the NICU, the NeoNatologist said, "We're sending out blood tests. There are... some signs... that make us think, maybe, the boys have Down syndrome." I nodded nonchalantly, murmured, "OK." FOR ME... it was OK! It was ALL OK! That sentence barely registered on the Richter scale given all the other cr*p they'd told me to expect. Oh, I HEARD it! And I fully and immediately understood that this was their way of telling me my babies had Down syndrome. But, I didn't care at all! My babies, my boys, my identical twins, were alive and well and breathing on their own.

So you see, it's really all about our expectations and not about the child! My children are, and every child is perfect -- perfectly IMperfect -- just exactly as they are. And our expectations are IMperfect too!

Every parent I know that has a child with Down syndrome will tell you that the experience has been an absolute blessing in their life... though many admit that they may not have embraced this notion immediately upon learning of their child's diagnosis. Yes, there may be challenges and/or difficulties inherent to having a child with Down syndrome or any other special needs. But, there are no guarantees with any child -- with or without Down syndrome. I've learned that if parenthood is nothing else, it is full ofsurprises, challenges and/or issues that continuously pop up along the way and often when you least expect them. These are my expectations.

5 comments:

Great post! I used to be very "strict" about my expectations, since having Marissa my new motto has been God will make it work. Now we're pregnant again and awaiting twin boys as well, certainly not in our original plans, but God will make it work because he always does. Down Syndrome or not, God always makes it work. :-) I couldn't agree more that it's out own expectations that are imperfect and not our children.

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My Motivation

Inspired by the http://happiness-project.com/, I began this blog in pursuit of my own happiness while raising my 3 children -- including identical twins with Down syndrome. On these pages, I endeavor to document the bits and pieces of my life that bring me the most happiness and keep me focused on all the positive stuff going on. Advocacy, Angels and Random Happy Thoughts. These are the threads of happiness that are inextricably woven through the cloth of my life. Staying focused and writing about these things is what keeps me Walking on the Happy Side of Life. I'd love it if you would "Take A Walk on the Happy Side" with me.

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THINK THANKFUL

There's barely a better sign that someone -- or some dog -- is happy to see you than when they wag their tail. My Bubba, a 13-year-old black Chow Chow has a curly spray of a tail that she very discriminantly wags... But always ALWAYS rapidly for me when she greets me as I walk into the house. I LOVE that!

I absolutely love the sound of that deep, guttural, laugh-til-I-choke belly laugh brought on by big, wet raspberries. My kids LOVE raspberries. And, I love to oblige just to hear that beautiful, joyful laughter that happens whether they're actually being raspberried or when they're just ANTICIPATING raspberries.

I'm thankful for the feather-soft skin and barely-there blonde peach-fuzz at the base of Brian's and Michael's neck. It is my most favorite place to kiss them... eliciting a giggle that sounds like the tinkling of a crystal bell. I LOVE it!

I love lying in bed beside my daughter at night... each of us reading our respective books. Then, when she finally closes her book and snuggles into her pillow, I listen for that easy and even breathing that indicates she's fallen peacefully to sleep. It is a routine I love. A peaceful way for both of us to end our day.

There is no greater joy than waking up to my children's beautiful sunshine-y smiles each morning!

I am thankful for my boys' healthy and strong immune systems. Brian's recent bout with pneumonia was short lived because his immune system (and the antibiotics) responded well and quickly. I've heard stories of pneumonia lasting several weeks. Thankfully, ours was a quick 3-day hospital stay with amazing results restoring him quickly to good health!

I LOVE the feeling of my sons' warm little hands holding mine when they want to show me an amazing discovery in the next room, or to feel safe, or to drag me and my attention away from the computer and back onto them (where it should be anyway). That simple gesture absolutely warms my heart with love.

I am thankful for my children's laughter. It is surely the most heavenly sound on earth!

As it turns out, I'm thankful my boys were home sick today. Thankful that they aren't TOO sick and thankful to spend a leisurely day with just them. We stacked blocks, painted, played with playdoh, blew bubbles, watched some movies, wrote with our magnadoodles, had lunch together and, finally, put together and played with our new hotwheels track set we got for Christmas. We even got the boiler fixed while we were all home during the 4-hour repair window they give you. What an EXCELLENT day! And, it's not even over yet!

Though I'm not thankful for childhood illnesses like croup which Brian is currently fighting, I am extraordinarily thankful that Brian, Michael and Olivia have healthy immune systems. As they've proven over and over again in their short lives, their little bodies are able to fight the nastiest of germs and win! Fortunately, Brian's already on the better side of it so we should all be healthy for Christmas!

I LOVE to see the sunshine sparkling on the water's surface. And, I'm thankful to live near enough to the water to see it almost everyday. It always catches my eye and makes me slow down to take notice. Ahhh, it soothes my soul every time.

I'm thankful that I have good friends who trust me to be a sympathetic listener when they need one.

I'm thankful for those few stolen moments I occasionally get to take for myself, to quietly watch the sun greet the day, in the wee hours of the morning, before every one else is awake!

It just occured to me that everyone should have a friend like Tammy! Someone who gets you out of yourself and always makes you laugh... even when you're talking about something serious. So, today, I'm thankful for my friend Tammy for helping me always to see the funny side of things.

Thank God for those occasional rainy days that let me relax and just be with my kids without rushing to make a plan or accomplish a task.

Thank God for my yellow fleece blanket. I LOVE to quietly slink into bed, hunker down deep and drift off to sleep... toasty warm!

Thank God for long, hot, uninterrupted showers. Especially after skipping a day because life got in the way!

Thank God that I was blessed with Brian & Michael before science found a way to prevent Down syndrome. Certainly,my life is better for their presence... just exactly as they are!

Thank God for my "online" girlfriends who truly hold me up in cyberspace when I feel like I'm crashing.

Thank God for my strange sense of humor. It keeps me thinking funny thoughts and laughing out loud all day long.